Tom Clonan (Independent) | Oireachtas source

I thank the Minister of State for attending. Aids and appliances are a means to an end but not an end in themselves. Although they are very useful, we cannot really consider them in the absence of the requirement for personal assistants and therapists. I will go from the individual experience to the wider experience within the community. I echo what my fellow Senators have said about the Minister of State's absolute sincerity and her persistence in advocating for us and our community. That is without doubt, so she should not take anything I say as a personal criticism. I am speaking from our own lived experience. Eoghan, my son, is 20. Over the years, because of his neuromuscular disease, he has had access to digital and assistive technology. For example, he has a very large iPad. His eyesight is compromised but the large iPad allows him to see the print on the screen. He has had some voice-activated software. It can speak his requests and needs into a device, and it can communicate, by text or another means, with another person. Unfortunately, however, because Eoghan has not had any speech therapy since 2007 or 2008, the voice-activated software can no longer discern his scanning speech. This is one of the points I am trying to make. In the absence of meaningful therapies, the digital and assistive technologies, in and of themselves, cannot really function.

There are also very practical matters to be considered. Eoghan is unable to plug in or unplug his tablet, laptop and other devices and put them on the tray of his wheelchair. He would require a personal assistant to do that but he does not have one. He has somebody who assists him in the morning with getting dressed, showering and going to the toilet, but that person then leaves. He is on his own in the house all day as a 20-year-old man – a young man blossoming, a beautiful young man. Unlike his siblings, he is confined to the house because he cannot go out independently without a personal assistant. I set him up with his tablet in the morning. This summer, he watched the whole show “Friends” from start to finish, but, instead of watching friends on a screen, he would prefer to have friends. He cannot have friends and is isolated despite the state-of-the-art technology because he cannot leave the house. He does not have a personal assistant to bring him to Dundrum Shopping Centre or into town to have a cup of coffee. He is denied all these experiences despite the state-of-the-art technology because an essential support is absent for him, just as it is for tens of thousands of children and young adults throughout the Republic. I am aware that the Minister of State knows this from her visits around the place. There is a recurring theme of unmet needs throughout the State.

Very many of the assistive and digital technology platforms require intensive input, either from an occupational therapist or physiotherapist with a special interest. This is from the end user's perspective.It takes quite a deal of training and reinforcement to enable a child or a young adult to get the most out of the technology. If one has one physiotherapy appointment a year, if one is lucky, that lasts one hour, that meaningful interface does not take place. I know this to be a fact. The progressing disability services for children and young people policy has failed and Paul Reid has acknowledged that on the record at the Committee on Disabilities Matters a number of weeks back. The wonderful steps we have taken forward in digital technology are very much meaningless without those human interfaces. That is the end-user perspective, which I will not beat to death.

From the point of view then of other service provision, I have had a virtual occupational therapist, OT, visit which did actually work, where Fannin Healthcare came and delivered a bath chair. The OT, through my mobile phone, was able to look at the bath chair. One could certainly not provide services such as physiotherapy and occupational therapy virtually or remotely. It is just not possible given the requirement for the physical intervention.

I use this opportunity to say that there is a complete requirement for us, and I know that this is the absolute mission of the Minister of State for the lifetime of this Government, to constantly reiterate the fact that we do not have the basic building blocks, that is, the personal assistant, PA, hours. These are not being provided by the State, by the HSE and are not being provided by the private care providers that are funded by the State. It is just not happening. In the absence of those supports, the digital technology is, to a greater or lesser extent, meaningless.

I will finish on one final negative point and then I will conclude positively. I am very conscious and I have just come from the third level sector where we delivered all of our lectures virtually. Virtual delivery of services in things like education or day services to people with disabilities is a very poor substitute for real-world interactions.

People with disabilities are already isolated because of the lack of support from PAs and so on. I would hope that the providers will not rely upon digital technology to give lip service to day services and other supports because it further isolates people with disabilities. I saw it this summer with my son at home, where he is now. In fact he is on his induction today so he has a PA for the period of the academic year.

On a final note. There is hope and I commend the work of people like Professor Brian MacCraith, former president of DCU, and Professor Daire Keogh. They have the exoskeleton programme in DCU. Eoghan and I went out at Brian MacCraith’s invitation. It is an extraordinary thing and is an actual skeleton that will wrap itself around a disabled person and assist them to walk. The technology now has perhaps 500, 600, 700 and up to 1,000 messages per second. The next generation level of exoskeletons will have hundreds of thousands of messages per second in the sensor so it can tailor itself to an individual person. Eoghan and I went out and he was shivering with excitement to have the opportunity to see if this could help him walk or move. When the physiotherapist did the assessment of Eoghan, he found that because of a lack of physiotherapy over the years, Eoghan’s contractors had deteriorated to such an extent that he was not a candidate for that technology.

Again, this underscores the requirement for the human intervention and while digital technologies provide very significant quantitative leaps forward, qualitatively, they do not really impact to a significant degree on the life and lived experience of people with disabilities. I thank the Acting Chairman.